4.1 Article

How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?

Journal

Publisher

SAGE PUBLICATIONS LTD
DOI: 10.1177/14713012221123578

Keywords

resistance-to-care; rejection; activities of daily living; social care

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Funding

  1. Alzheimer's Society, UK [372 AS-JF-17-002]
  2. National Institute for Health Research Applied Research Collaboration East of England (ARC EoE)

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Understanding the individual care recipient is crucial in managing refusals of care. Caregivers employ various strategies such as finding the right moment for care, utilizing specific communication techniques, seeking support from others when safety is at risk, etc. to prevent or address refusals of care effectively.
Background and objectives Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers' (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia. Research design and methods One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings Core to the caregiver experience of refusals of care was knowing the person . This underpinned five key themes identified as caregivers' strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplifying, leaving, or adapting care; (4) having confidence in care; and (5) seeking support from others when safety is at risk. Discussion and implications Different caregiver relationships with the person with dementia influenced how they managed refusals of care. Refusals of care can place caregivers in tough situations with tensions between providing care when it is seemingly not wanted and leaving care incomplete. Both caregiver groups require support such as coaching, mentoring and/or advice from other health and social care practitioners to manage difficult personal care interactions before crisis points occur.

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